Why, with all the meds, do I still hurt?

Lupus diagnosis advice

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Quote Originally Posted by terriaw44 View Post
I'm new to this site. I have been sick since October of 2009. I went to the doctors in January of 2010 for the fatigue, depression and overall pain. My doc ordered blood tests, they came back showing postive ana, low vitamin D, high cholesteral..can't remember some of the other things. He sent me to a rheumatologist (my spelling sucks!). This doc has run blood tests, same results, which still didn't give info for a definitive diagonisis. I had an MRI, which showed something in the white matter-they mentioned vasculitus. Nerologist said not enough to say MS, he was positive it wasn't MS. I have been on cymbalta, lyrica, vicodine, and tried predisone (I have to quit after 9 days of hell from side effects). Now I'm taking lyrica, vicodine/ultram (depends on pain), and the plaquelin. I still have no relief. I wake up all night long, and waking up is not fun! I am totally exhausted, stiff, off balance, it feels like the worst hangover you could ever have. So, some nights I try to just stay awake to avoid the waking up, then all day I keep falling asleep. Once the "waking up" has worn off, I still have joint and muscle pain, but I manage to put in about 4 hours of housecleaning, work, grocery shopping--general living stuff-before I start to feel I can't go on. But I'm afraid to stop, because when I do the stiffness, joint and muscle pain set in and it feels like I'm wearing a lead bodysuit.
My husband and I own and entertainment company, he is entertainer, we travel and alot of jobs require us to be entertaining late at night. This is very hard for me now and sometimes I just can't do it. Lots of people say they can hang or party like they use to, but this is different. It hurts to try and hang or party.
I don't know if I have lupus or not. I don't have skin rashes, although it sometimes is slightly pink across my cheeks and nose, and I don't have problems with the sun. I hear about lupus flare ups, I don't have any good or normal feeling days (even with all the meds I take), I have not heard how long a flare up can last. Can they last years? Does the meds really relieve anything ever for other people--I don't take the pain pills during the day as they make me sleepy-? When people are not in a flare up, do they feel good, happy, normal?
Sorry for this long unorganized story! And if this isn't the right place to be posting this, I have never done this before. Thanks for listening to me!
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  1. Linda From Australia's Avatar
    I just posted a reply in the thread you wrote in if you want to check it out. Welcome again
  2. terriaw44's Avatar
    Quote Originally Posted by Linda From Australia
    I just posted a reply in the thread you wrote in if you want to check it out. Welcome again
    Thanks for the comments! I just started the plaquelin about 2 weeks ago. I do hope that there is some relief somewhere soon. I think I will start taking the vicodin in the morning and see what happens. They will only give me 30 pills a month, so I try to make them last all month in case there is a really horrible day.
  3. terriaw44's Avatar
    Well started my day off today not so sore out of bed! And I did have a good laugh at myself..made my first cup of coffee (we have a single cup brewer) but forgot to put the cup under the brewer! The memory and forgetfulness sometimes does make life a challenge, but sometimes you just have to laugh.
  4. Linda From Australia's Avatar
    My daughter and son in law came over this morning after a night out celebrating the New Year. My son in law started putting empty drink bottles in the fridge, forgetting where he put things, couldn't remember what he was talking about etc.... I had to laugh and remind him that he now knows how I feel when I am having a bad day, which is often
  5. terriaw44's Avatar
    That is so true! I forget things my husband tells me almost as so as the words come out of his mouth! This upsets him alittle! lol